THE MEANING OF (MY) LIFE: OR, THAT CHICK’S GOT CRIP CRED OUT THE YIN-YANG.

I’m ecstatic, ebullient. Over the moon.   My mind is blown and my heart is a-flutter.

You see, I’ve had an epiphany of Biblical proportions. I have discovered the meaning of life, or rather the meaning of my life.  And I didn’t have to go to an ashram in India to do it. It simply came to me out of the blue.

I now understand why I was put on this Earth, and it’s not about my own personal journey of self-discovery or growth. In fact, it’s not about me at all.

I exist solely to make non-crips feel good about themselves.

That’s right: the purpose of my existence is to reassure those who don’t (yet) use canes, crutches or wheelchairs to get around.

Why, you might ask, do those folks – the ones who don’t move through the world in gimpy fashion – need reassurance?

I’ll tell you: when you can get out of bed in the morning without pain and go about your day without restrictions in movement, it’s pretty dang scary.

I mean, who wouldn’t be rattled by having no worries about whether your caregiver will show up on time because you don’t need a caregiver at all? Putting on your own clothes and making your own breakfast is stressful. Not having to rely on para-transit to get you to work on time is nerve-wracking.

OK, I’m just going to say it: non-gimps have a pretty crappy life.

But, see, that’s where I come in. I am absolutely, positively, undeniably disabled. For one thing, I use a power wheelchair for mobility. And on the rare occasions that I stand up and take a few steps on my own two feet, ain’t nobody gonna mistake me for an Olympic athlete.

In fact, I wouldn’t be surprised to someday overhear someone whisper: “Say what you want to about Heidi, but that chick’s got crip cred out the yin-yang.”

Clearly, my life’s purpose is not to be a valued, autonomous human being with my own meaningful existence. No sir. I was conceived, raised and put out into the world to serve as an example of what NOT to be. Of what to be thankful that you’re not. A sort of goofus gimpy human being to serve as a foil for the non-gimpy gallant ones.

I’m a living embodiment of the tried-and-true bromide: “I was sad that I had no shoes until I met a man who had no feet.” (In this case, I’m the one who has no feet. Except in reality, I do have feet, though they’re mangled and pretty messed up.)

Imagine, a half-century I’ve spent contemplating the purpose of my existence. All the wisdom I’ve sought from the teachings of philosophers and sages. Countless hours of ruminating.

All along the answer was to be found in the pity-filled gazes of non-gimps not-so-secretly grateful that they’re not me.

Thank you ever so much, all you graceful-gaited, altruistic non-gimps.

Without you, I would be nothing.

A TRIBUTE TO STELLA YOUNG

She was slight of stature and made her way through life on wheels, but she was a force to be reckoned with.

 

Stella Young was a feminist, disability activist, comedian, writer, atheist, Aussie and avowed knitter. She embraced the term “crip,” turning it back on the establishment. She refused to play the role that society tried to impose on her: the cute, demure, little girl in a wheelchair.

 

Young once wrote: "I am not a snowflake. I am not a sweet, infantilizing symbol of fragility and life. I am a strong, fierce, flawed adult woman. I plan to remain that way, in life and in death."

 

Sadly, her death came all too soon. She recently passed away, suddenly and unexpectedly, at age 32.

 

Young lived with the challenges of osteogenesis imperfecta, a condition that affected her connective tissue and made her bones vulnerable to fractures. But that was hardly the thing that defined her.

 

She didn’t shy away from and the truths she knew needed to be told.

 

Young often spoke out against "the soft bigotry of low expectations" people with disabilities encounter.

 

"It speaks to this kind of assumption that people with disabilities are 'brave' because our lives are horrible and that's not true at all," said Young.

 

In a TED talk, Young referred to the trite phrases -- such as "your excuse is invalid" and "don't quit, try" – that accompany photos of disabled people online. She found them annoying, labeling them “inspiration porn.”

 

"The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, 'Well, however bad my life is, it could be worse. I could be that person.'"

 

In her TED talk, Young expressed disgust for the bromide, "The only disability in life is a bad attitude:"

 

"No amount of smiling at a flight of stairs has ever made it turn into a ramp. No amount of standing in the middle of a bookshelf and radiating a positive attitude is going to turn all those books into Braille."

 

But Young didn’t lambaste only greeting card-worthy clichés. In an open letter that she wrote to her future 80-year old self, she spoke of her struggle with disability identity and self-acceptance. 

 

“Remember those days back before you came out as a disabled woman? You used to spend a lot of energy on 'passing'. Pretending you were just like everyone else, that you didn't need any 'special treatment', that your life experience didn't mean anything in particular. It certainly didn't make you different from other people. Difference, as you knew it then, was a terrible thing. I used to think of myself in terms of who I'd be if I didn't have this pesky old disability.”

 

Thank you, Stella, for reaching out to disabled people struggling with the shame we’ve internalized from society’s devaluation of us. Thanks for your fearless advocacy. For not pulling punches with your words.

 

Stella is the Latin word for “star.” Although Stella Young has died, her ideas will burn brightly for eternity. 

ART AND DISABILITY IDENTITY, OR CRUSHING DUNG BEETLES BENEATH MY ORTHOPEDIC SHOE

Art Basel Miami 2014 is this week and naturally, art is on my mind. All year, I look forward to not only the main Basel show, but also the scores of satellite shows and gallery exhibits that have grown incredibly over the last dozen years. I always attend as many as my wallet and stamina allow.

 

Contemporary artworks most likely to draw me in address issues of identity: identity of an individual or a group or a nation. Art produced in Miami or by artists from the Magic City often deals with the identity of immigrants and refugees. At Basel, female identity or identity along the lines of sexual orientation are frequent themes.

 

But no matter where I go to view art – Miami, New York, Mexico City, London, Madrid and beyond – I find a dearth of works about disability identity. It’s not that it doesn’t exist. It simply isn’t anywhere near 20 percent of identity-themed art, 20 being the oft-cited percentage of people with disabilities in society.

 

It makes me a bit melancholy. It feels like one more confirmation of our lack of presence, of our lack of a voice. One more directive by society to either act/look/pass as non-disabled, or else go off to live in some mythical, isolated disability underworld.

 

Though I’m a writer rather than an artist, it seems like identity would be such a rich vein to mine for artists with disabilities. Just taking the stereotypes and roles that have been foisted on us and turning those back on themselves would make for provocative, edgy stuff indeed.

 

Want to disempower me with the label “wheelchair bound?” I’ll photograph myself in bondage gear, my ankles bound to this wheeled device that brings me power and freedom.

 

See me as a sorry little creature put on this Earth to make you feel better about your own troubles? I’ll paint you as dung beetle that I crush beneath my orthopedic shoe.

 

Think I sit at my window all day, looking at the world I cannot join and mourning my brokenness? I’ll make a movie that shows disability as the dominant culture, where so-called “normal” people hurl themselves down staircases in order to be accepted.

LIFE IS A BULLRING

Inspiration and strength sometimes come from unexpected places: the hues of a twilight sky, a silly escapade, a song lyric.

My husband and I were on a trip to Spain when we visited the Andalusian town of Ronda. It’s a lovely spot suspended over a canyon with three iconic bridges. Madonna fans will recall it depicted in gorgeous sepia tones in the “Take a Bow” video.

One afternoon, my husband and I dined at a lovely café, leisurely enjoying lunch and two bottles of Rioja. Next door was the bullring. No corrida de toros that day, but tours were available. We couldn’t resist.

After a pass through the arena’s small museum, we explored the field. Perhaps it was the joy of a pleasant day or the wine or both. I found myself possessed by the spirits of matadors past. I stood up and begin swooping my red jacket like a cape, daring my wheelchair to come at me, its handles like the horns of a bull. My husband began shooting photos as I posed, spurred on by the shouts of an imaginary crowd.

Perhaps it was silly, merely the momentary playfulness of a tipsy woman on vacation. But when we returned home, and I reviewed the pictures, I recalled the lyrics of a song I love. It was “Jean the Birdman,” by English singer-songwriter David Sylvian:

Life is a bullring

For taking risks and flouting rules

Who needs a safety net

The world is open wide

Just look out for card sharks

And the danger signs

I printed out one of my husband’s photos with the lyrics typed below. I posted it on my office wall.

On days when my pain flares or I’m anxious or things are just not going well, I look at the photo.

If only in my mind’s eye, I‘m back in Ronda -- clad in a bullfighter’s spectacular traje de luz – and life seems full of possibilities and adventure.  

EVIL WHEELCHAIR: DESTROYER OF LIVES

Ah, the wheelchair – that sad symbol of failure and loss. A 25-pound contraption of vinyl, metal and rubber that seems to have an almost mystical power to break the human spirit.

You’ve heard the comments.

“That poor man, he’s stuck in a wheelchair.”

“She’s got a handicap that’s left her wheelchair-bound.”

“What a shame – confined to a wheelchair.”

I know of what I speak on a personal level. I’ve been confined to my prison on wheels for 30-plus years. And let me tell you, it’s no picnic.

Using a power wheelchair is certainly a burden. When I got my first one at 18, I realized the consequences right away. It forced me to get around on my own, and I had no choice but to go away to college. Sadly, being able to get out of my house meant I had to meet people, some of whom became dear friends and one of whom became my beloved husband. I even had to get an education.

As if that weren’t bad enough, the chair’s powers sentenced me to getting my own apartment and going away to law school. Three years I spent in that university! Three years of education that allowed me to pass the bar exam on the first try! All due to the mobility caused by that damn chair.

Getting around independently has even more drawbacks. It’s forced me to have a successful career I’m proud of, and allowed my husband and me to take vacations. Wandering the white hilltop villages of southern Spain, exploring the Tuscan countryside, taking in plays on Broadway and London’s West End – all enabled by that blasted chair! Why can’t it just leave me alone?

But at least my days are brightened by kind strangers with pity in their eyes who hand me dollar bills. Why, those extra two or three sawbucks a month sure do help pay the mortgage. And I never grow tired of hearing folks shout out: “Slow down, little lady. You’re gonna get a speeding ticket!” Why, just last week I heard the 5,741^st person say that very-same phrase to me and I burst out laughing. Noel Coward and Dorothy Parker had nothing on that clever wag!

I have to hold onto these meager bright moments in my life. Otherwise, the misery of my incarceration in my wheelchair would truly be too much to bear. If only I had no chair to take me around and could simply remain in my house each and every day. I imagine a life spent in front of the TV clad in T-shirts and sweatpants, watching Jerry Springer and eating Cheez Doodles. Ah, but it’s only a dream…

But I vow to accept my fate. I shall remain strong. What choice do I have in this miserable prison on wheels?

THINGS PROVOCATIVE, EDGY AND PROFANE

You might call me a cripple or a freak.  Though if you’re going to use epithets, I’d prefer “gimp girl.”

It’s pejorative. But since I both struggle to walk and have ovaries, it’s true.  Not “True” as in the Spandau Ballet song, but “true” as in truth. The kind of truth that -- if you own it -- will set you free. 

I’m ready to own my particular truth. I’m ready to be set free.

Oh, wait a minute. Perhaps you’re thinking I need to be set free because I’m a prisoner in my own body. I can’t water ski or kick box, so my life is devoid of all meaning. May I point out that such a thought stems from the assumption that being able-bodied is always superior to being disabled? That’s a very progressive way of thinking, provided you’re living in the Middle Ages.

OK, that was rather bitchy of me. Sorry. Let me back up and clarify a few things. I’ll try to be more polite.

I don’t want to be anyone’s inspiration. Don’t pat me on the head or gaze at me with pity.

And for heaven’s sake, if you pass me on the street, don’t hand me dollar bills. (I’m not a stripper.)

I don’t exist on this planet primarily to suffer, and my suffering isn’t about making you feel more content with your own situation. None of this “I felt sad because I had no shoes until I met a man who had no feet” nonsense.

If you’re still expecting heart-warming tales about a chick who triumphed over a terrible disease and grew up determined to find a cure, you’ve stumbled upon the wrong blog. (Forget medical research. I wanted to grow up to be Joan Jett.)

But if you seek out things provocative, edgy and profane, welcome to EarthBound TomBoy.